Live coverage of Future of Genomics conference

Many of the world's top geneticists have gathered in La Jolla for the Future of Genomics Medicine conference. We will provide live coverage on March 7-8. Thursday's first speaker will conference organizer Eric Topol of Scripps Health, who'll talk about a study he is doing on idiopathic diseases

The Twitter #hastag for the conference is FOGM13.

2:35 p.m.George Weinstock of Washington University in St. Louis is talking about how genomics will affect the diagnosis of infection disease.

"I can imagine a $1 bacterial genome in the not too distant future."

Says the sequencing is helping us study the microbiome, which has more genes than our regular genomes.

Gholson Lyon of the Utah Foundation for Biomedical Research expresses concern that genetic samples taken veterans as part of the Million Veterans Program isn't being returned to donors.

Cinnamon Bloss on sharing genetic information

Cinnamon Bloss on sharing genetic information

12:19 p.m.: Summary of morning sessions: Scientist express a lot of concern, and some anger, over issues like medical paternalism (the belief that only a few people could make constructive use of genetic material), and indecision over whether patients have a right to their own information. There's also a lot of silo-ing going on; scientists who remain in fiefdoms and don't share potentially life saving information.

11:57 a.m. : They are in a panel discussion. It's spinning off Topol's remarks that a lot of people are going to get sequenced but there is no guarantee that the information will make it back to the donor."

Speaks about the Institution Review Board (which approves experiments). "As maddening as those four hour meetings are, what goes on in those rooms are important."

But he sums up problems in the biomedical industry, saying:

"There is a reluctance to share even basic information with research participants."

"We prefer fealty to the rules rather than to people."

"There is genetic exceptionalism (the belief that genetics is too scary for mere mortals to understand."

11:12 a.m.: Now up, Cinnamon Bloss of STSI will talk about, "What data to give back, and how?" STSI has been doing whole genome sequencing. "At this point, we have not been returning the results of secondary testing, but are interest in doing so."

Bloss says, "Physicians, as a group may need help with genetics and, in some cases, may not know it."

Should we share secondary findings that come from sequencing?

How would you grade your physician? (Straw poll from crowd shows a lot of dissatisfaction.) But when we ask patients at STSI to talk about their physicians, they get in the A range.

In some cases, we see dissatisfied family and patient, but satisfied physician.

Lyon furious about the handling of genetic samples from the Million Veteran Program. "How is it in the interest of the veteran to suck their blood and not give them data back?"